Tuesday, September 24, 2013

The guilt that comes from being Blessed

:*( Please keep this little guy in your thoughts and prayers. He is only 11 years old. He woke up screaming with the worst headache of his life. His parents knowing what it could be, called 911 right away. As they waited for the ambulance to show he was trying to speak. He felt nauseous, and he started to stiffen up and moaning low trying to breathe. On the way to the hospital he stopped breathing. He had a brain hemorrhage. A local emergency craniotomy was performed. He is still in a coma.



Here is the update from his mother:


"The doctors really don't give us any hope but we refuse to give up on our son. He is only 11 years old. Our hearts are broken, and we are so confused as what to do. I know i could never live with the fact of knowing i played God and ended my own child's life. Even the thought makes me wanna throw up. So we have decided to go the other route to give him time. Has anyone here been in a similar situation? I don't really know what to expect. I know he will be in some pain after the surgery. I just want the best for him. Has anyone had their child on a ventilator for a long time? If you have any helpful information for us please help. Please pray for our son. and follow his facebook (Roy Vasquez Jr) if possible. . Thank you"


I cant really explain how news like this makes me feel.  Every day, I feel blessed, not only to be here, but to know how fortunate I am to be here in the state I am in.  The way everything happened, the order it did… my diagnostic, my crisis, my surgery, my recovery… everything!!   I KNOW how blessed I am…


but when i hear stories like this… I feel … guilty.  Not an “its my fault” guilt, but a “why me and not others, a child??”  There are so many things that cross my mind…. How blessed I am to have found out about this time bomb before it completely explode… how blessed I was with the way everything felt into place.. the people put in my way, finding Dr.Spetzler, the timing of things… (you can read here:  a series of unfortunate events)  I feel blessed...but the more blessed I feel, the more guilty i feel, too.  


When Dr.Spetzler's assistant called me after viewing my scan, he told me that they concluded that I had a 99% chance of having a devastating hemorrhage between now, and 5 years.  They could do the surgery now, and risk major handicaps now, but death was at a much greater risk to occur if it hemorrhaged on its own.  He did not tell me what I should do as it was a risk now and not know the outcome, or just wait until it happens on its own any day and  not know the outcome.  He said "damned if you do, damned if you don't".  When he called me, it was 8pm and Jay was sleeping before he works at midnight.  At first I was shocked to have such a quick response, because I sent my MRI just 2 days earlier. (overnight shipping, at my friend’s demand)  He couldn't tell me what the best decision was. He asked me if i was having this or that symptoms. He sounded … discouraged. I could tell he didn't want to be telling me these things…  and the prognostic was grim, yet, I could tell that he was trying to tell me “do it , do it”  (the surgery) He told me that according to my symptoms, my cavernoma was very active and it would be devastating before we knew it, but it was indeed one of the most difficult situation to be in, because the surgery was as risky.  It was not a matter of “what” but a matter of “when” . If I let it go in hope that i still have 5 years, or that I belong in the 1%, I would most likely end up having emergency surgery by a local neurosurgeon that said "80% death, 95% very severe deficits, nursing home type of deficits..." I knew that if i didn't risk now, later would come soon and that would be my fate. I knew that surgery was the best option.. because it might happen “now”, but my chances with this amazing surgeon were nothing compared to the ones that would be performing the surgery whenever this thing burst.  It was better to become disabled now, than to become a vegetable later…   It was very painful to know that I was willingly going to lay down and wheeled into a surgery that was going to disable me, just so I can live and see my children grow up, but it quickly came the only choice for me... I picture myself in a wheelchair, with a white board to write, and not in a nursing home, not looking or acting like myself, not even knowing who I am.  It was a lot to take in, and my head was spinning, because phone conversation did that. They still do… however, I don't remember what I told Jay later that night, but I am pretty sure I made it sound as positive as I could. I remember not telling Jay all the bad statistics and news. I didn't find it necessary. They were not going to change the outcome. I never told my parents, either.


That said, as painful and difficult that was... I do not feel special to have thrown myself willingly into a future of disabilities.  I simply didn't want to have my husband have to tell his children that their mother was not here anymore. Friends made me understand that my children would much rather visit their mom in a nursing home, than a graveyard.   I do not feel brave, or courageous. I feel like a mother.   At the rehabilitation center, I was always heard laughing. I didn't realise how loud I was until I heard a patient there ask "why is this lady always happy, how can she be so happy in this condition" (I couldn't even get myself in my wheelchair by myself yet)   I told the nurse "Just tell her that i am just... happy! I accepted the worse and was at peace with it, so this is just pure happiness for me, plus my husband is a goof ball"  and its true. I also didn't expect any big milestones. I was going to do this day by day... which is ironic because I did achieve milestones so much quicker than anyone ever thought possible.  I never worried, was not stressed, always laughing to the point my belly hurt. I think some studies have to be made about the healing process... haha naturally think that nothing is wrong with you heals what is actually wrong with you. hahaha


What I do feel now, is guilt. I cant help it... Over and over, and over, I hear  of people that DIDNT know they had this time bomb in their head. If it was not from my physician that sent me for an MRI, I wouldn't know. I would know how i feel, and probably prescribe a bunch of meds, but I wouldn't know why, because MRI are not something doctors send you for easily.  I, too, would of had a massive hemorrhage, have surgery and have this outcome. Knowing about this was a curse at first, but its a blessing  too few with this "tumor" have.   The guilt, is what some called "survivor " guilt... but to me, its more than surviving the surgery. I may of survived the small hemorrhages before my surgery, but its not like I did anything... it could of been massive any of those times.


I am not even sure guilty is the right word... its more like a deep sadness... because I now come across people, children, that didn't know... didn't have "warnings"... BOOM!  Brainstem cavernoma are so rare...and yet some cavernoma in other parts of the brain that can be easily operated on... if they explode and cause a massive hemorrhage, it will do as big of a damage. Sure its small, it will simply be removed, and that does happen to a lot of people... but if you didn't know and it just burst..... SO... I know i am thinking deep here... and i really shouldn't, but when i read stories like this one... I cannot understand why I am where I am.  The irony of it all gets overwhelming to me.  At the same time, on February 18, when I found myself struggling to breathe and swallow and couldn't fell or move my body for 6 hours, I knew what this was, and I had just decided to go get the surgery in Arizona. I was aiming Fall of 2013, after the kids go back to school. I was in the ambulance feeling worse by the minute, really bracing myself to pass out any minute, knowing it was the end whether I die or wake up "gone".  But I didn't. It was a bleed so small the local hospital didn't find it and called it "stress". Spetzler found it when he did what he does best; play in people's brain.  


I soon realized that what I thought was a curse was in fact a blessing… the answer to my prayer, as I have been begging God to give me Peace over the choice I have made to have surgery now. I thought surely, God was not going to allow me to have a massive bleed now before my now scheduled surgery  6 days later.  I was totally convinced of that. God didn't allow all these circumstances to fall into place like this, and cut it short, like some type of bad jokes.  In the ambulance that famous day in February, that is what I kept repeating to myself in order to stay hopeful and positive.  At first, I was sad, very sad and said “Not now, Not now” because I thought for sure I was having a massive brain bleed. I couldn't feel my body or move at all. I really felt like I was going to pass out any minute, and I knew that once I would, I was not going to wake up the same, if i did wake up. I knew that this meant, that even tho I had found a surgeon to do this surgery better than anyone else in the country could, I was destined to have local surgery by the surgeons that condemned me, and have a life of disability. So I prayed… I prayed that God gave me the strength to accept that.  I saw Jay sitting in the trauma room, and he put his head in hand. He is a tough guy. He never showed me that he was scared, or even worried. I know he loves me dearly, but he just doesn't show that kind of emotion. At that moment, I saw how scared he was, and it broke my heart.  I don't know what they put in my IV, but I felt better not long after that.  I felt a very weird sensation in my head, like a very cold droplet of water. Its almost as if I felt it disintegrate. Somehow, I knew I was going to be ok, for now. But I was scared… I had experienced how quick and strong this was, and I knew that it could happen anytime again.  

It didn't.   

It didn't happen. I had surgery, and I am fine.  Why me, and not someone else?  What is permanent and i will have to deal with for the rest of my life… if they fell upon me out of the blue, I probably would of been miserable.. but because they came to replace much worse, I see them as a blessing.  


…. Please pray for that little boy...

3 comments:

  1. Will pray for him and his family. Oh, my goodness. Poor little boy.

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  2. Thank you Liza. It's so sad... but when i hear of a child who is going thru what I was told I would... i cant really explain how it makes me feel. Its a struggle... It happens a lot... last week, a 8yo girl died the night of her pre-op... WHY?

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  3. Hi, L/DW - my favorite quote from above: "plus my husband is a goof ball." :) A cheerful heart makes good medicine. I am one of the people who did not know something was in my head until it ruptured devastatingly and I am now a disabled person whose Old Life is not coming back. But I can read a story like yours and rejoice with you without a trace of bitterness bc I am 100% certain that the Lord has a plan for both of us. Wishing you and yours a merry Christmas! Ann Ning Learning How (a friend from AVMSurvivors.org)

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